My life as I know it has changed forever. I once was an athletic, successful, strong woman with a bright future in front of me. But in the fall of 2003, something went wrong. I was constantly dizzy, I was extremely fatigued and just felt horrible. After a year of seeing every doctor on Long Island and being told it was in my head, I found two specialists who labeled my illness Mixed Connective Tissue Disease. This is my story...

Monday, August 23, 2010

The Long and Winding Road

"Every ounce of my being is grateful for this glorious morning. I awoke to hear the birds singing their beautiful music, witnessed the sun rays peeking through the rustling trees, and felt the warm summer breeze on my skin as it waft through the open window. My cup runneth over. Sometimes we take every day simplicities for granted. Thanks be to God for today's gift."--Rev Bev'ism

I have so much to be thankful for. A loving family and friends, a beautiful home, and so much more.

But for the last few weeks, I feel like my life is in limbo. For some reason, I just am not catching a break.

In a nutshell--since my last blog---I had finished another round of Rituxan, had received a positive report from the oncologist and was ready to begin a relaxing summer while our son was attending a six week leadership training camp out of state.

After my last chemotherapy treatment in June, it took several weeks for the drug to "do its magic," but it actually had started!!! For the first time in years, I was virtually pain free. It was as if I was no longer being held captive by the that horrible four letter word. P-A-I-N.

Then, in an instant, I was inflicted with another ailment that has literally knocked the crap out of me! My recurring gastro problems have totally taken over my life. So much so...that I cannot eat normally and I am always concerned what will happen when I leave the house.

Now, the doctor part of me knows that I cannot let fear overtake my life. I also know I need to eat in order to heal fully. But it is impossible. I have even tried not to eat...and it just doesn't make a difference.

On top of that, allergy season has hit Long Island head on...and guess who has it bad for the first time in years? Yep...moi!

Despite it all, I have tried to keep busy and not dwell on the ailments. Don't get me wrong...there are days that I just lie in bed and do nothing. I am entitled to do that...it is my right. But I have been making a grand effort to not avoidsituations."Instead of complaining about things you cannot control, be thankful that you have the ability to make a personal choice to change those things you can."--Rev Bev'ism

Graduation is right around the corner...and it is the first airplane ride I will be taking since my diagnosis.

Am I scared? You bet...but not of flying. I am afraid of not feeling well. But just knowing that I am attending my doctoral graduation is motivation enough. I have worked too hard for so many years.

In my mind, I pictured myself walking down the aisle with my cap and doctoral gown on...tears in my eyes...proud as could be. And it is almost here.

But first I must get through a lovely colonscopy this week...and as the specialist says...she is taking lots of biopsies along the way. Great! NOT! Hopefully she will find out what is going on and my life can get back on track. It just has to!

Despite the roadblocks, we did enjoy the summer. Our strawberry crop was amazing this year. And our veggies are doing well despite the high heat this summer.We are still harvesting cucumbers, corn, tomatoes, eggplant, broccoli and several herbs.

This was a summer of concerts/live music...my passion. We finally made it to Jones Beach and saw Chicago and the Doobie Brothers. It was amazing. Especially when the two groups got together on stage for the finale. Wow!!! The night on the water was picture perfect!

Our next live show was at The Boulton Center, where we got to see one of my all time favorite 70's groups: Firefall. Three members of the band, Steve Weinmaster, Jock Bartley and Bill Hopkins, performed an acoustic concert that was truly moving. Three voices, in perfect harmony, is something that today's music is lacking.

They had a meet 'n greet after the show, and I must say...these guys are three of the sweetest human beings you will ever meet! They performed ALL of their hits, including "You Are The Woman," "Just Remember I Love You" and "Livin' Ain't Livin."Steve Weinmaster, Dr. Bev, Jock Bartley and Bill Hopkins

On a very warm evening, we ventured to NYC to board the Smooth Jazz Cruise entitled Guitars and Saxes. For any jazz music fan out there...this was truly a treat.Lower Manhattan...simply breathtaking!

Jazz greats Jeff Golub, Peter White, Gerald Albright and Kirk Whalum performed to a sold out crowd, as we cruised around lower Manhattan. With camera in hand, I worked my way to the front and sat right in front of Peter White and shot tons of photos.Many of you know that I have been a huge fan of jazz guitarist Peter White for many, many years, and I have attended many of his concerts. This past year he reached out to me on Facebook after he found this blog, and we have kept in touch ever since.Peter White...making his guitar sing like an angel!

After the show, I walked downstairs to the meet 'n greet to ask Peter to sign a photo that I brought with me. When I said, "Hi, I'm Beverly from Facebook," he said..."You mean the doctor...Dr. Bev?" I started to cry and we gave each other a huge hug and kiss. It is a night I will NEVER, EVER forget. I love you Peter!Peter White and Dr. Bev

A few days later, Peter Noone and the Hermans Hermits gave a free concert on the water at Tanner Park in Copiague. It was wonderful hearing the oldies but goodies including 'There's A Kind of Hush' and 'Henry viii.' They just don't write them like that any more!Peter Noone

In the middle of everything this summer, our son turned 17! Watch out on the roads...he passed his permit test before he went away this summer and will start drivers ed this fall! Believe it or not, he will be a senior. Where does the time go?On the health front...Mom had surgery this summer on her eye, and she looks fantastic. I am glad I could be there for her and am thankful that she is doing well.

My sweet, 92 year old great Aunt Bert had a fall several weeks ago, and is recuperating in a rehab facility in NJ. Her positive outlook and fighting spirit is unlike anything I have ever experienced.

On a final note...I am honored to announce that this very blog, "My Life With Mixed Connective Tissue Disease," was the runner up in the 2010 Best Long Island Blog Contest.

Thanks to everyone that voted for me...for you are the reason I continue to write!

God bless each and every one of you.

"Rejoice...for today is a gift. Grab it tight, and cherish each moment because the next one is uncertain."--Rev Bev'ism.

7 Comments:

Hello Miss Boyarsky, I don't know it is comment will bother to you, but i need to speak with sometime about the problem of my mom, she used to be a strong woman when i was a child, but sometime change in a moment, 10 years ago she is always ilness and the doctor said that she has mixed conective tissue.My sister and me are desesperated, we do not know what to do, in Mexico the doctor's can't control this problem.I hope that you could respond me, this is my email: frigus.sunx@gmail.com

My name is Alexis. I was diagnosed with MCTD 2years ago after being constantly ill since I was a very small child. I am 28 now. I was given Plaquenil which I have been on since January 2010. It has worked wonders for me until now. I have been extremely sick (muscle aches, weakness, fatigue, dizziness, severe pelvic pain, bladder problems, headaches) for about a month now and my current rheumatologist has recently retired. All of the other doctors in his group are internists only just learning rheumatology, I was hoping you might be able to help me with regards to recommending a doctor who specializes in MCTD. I live in NJ, but will travel far and wide for care. I am in constant pain everyday and am desperate for answers. Thanks!

My name is Maria. I was diagnosed with MCTD about 3 years ago; I am 28 now. I am currently on imuran, prednisone, plaquenil, nifedipine, omeprazole, claritin, allegra, vyvanse, and effexxor. I'm in pain every day. I am working in a lab at an institute that focuses on the immune system. My undergraduate degree in chemical engineering and present study in immunology (hopefully PhD bound, eventually) gives me enough understanding to be incredibly frustrated with my disease and the treatments my doctors choose but not enough (yet) to figure out any other solutions. I used to be a healthy, upbeat, athletic woman. I am worried about my future. What has been the most successful strategy for you? I just discovered your blog and am trying to catch up but currently I'm in unbearable pain and trying to get through this quarter in school on top of working in the lab. Every romantic relationship I have dissolves. I am insecure about my illness and about how depressed it sometimes makes me. I don't feel myself.

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About Me

Dr. Bev is a Metaphysician, Certified Consulting Hypnotist, Ordained Minister and Psycho-Spiritual Counselor.
She left a successful 25-year public relations career after being diagnosed with a rare, incurable muscle disease. With her disease somewhat under control, Dr.Bev decided that she wanted to spend her time helping others.
"My illness physically guided me onto a path of insight and learning upon which I would otherwise never have set foot," said Dr. Bev. "It was a supreme catalyst for increasing my own higher consciousness."